Richard Bozanich and Jay Smith met at an Alzheimer's support group. A week later, they began hatching plans for a conference on the disease.
Rather than the usual forum for caregivers, it would be for people who were actually experiencing memory loss and other symptoms of early-stage Alzheimer's disease. The New York Alzheimer's Assn. pioneered such gatherings, but the two men wanted to take this new model a step further.
The California conference, they decided over lunch at a Koreatown diner, would even be organized by people with the disease.
In fact, they would do it themselves.
Bozanich and Smith are the new face of Alzheimer's. When the national Alzheimer's Assn. was formed in 1980, the people lobbying for research funds and demanding help were the husbands and wives, daughters and sons of patients.
Most patients were already in the middle to late stages of the disease, unable to speak or care for themselves, before doctors gave their symptoms a name.
There was little pressure to diagnose Alzheimer's earlier, given the bleak outcome and how little medicine had to offer.
As the disease progresses, symptoms include confusion, changes in personality, trouble with expressing thoughts, misplacing things and getting lost in familiar places.
"Support groups, help lines, respite care -- it was all geared to caregivers," said Peter Braun, president of the Southern California chapter of the Alzheimer's Assn. "People with the disease weren't seen. They were at home or in a care facility."
But early diagnosis gained a new urgency as the federal Food and Drug Administration approved four new drugs over the last decade that can, for some, delay cognitive decline for a few months or years. Now more people are learning that they have the disease while they can still speak for themselves. And some, like Bozanich and Smith, are determined to make their voices heard.
"My mom's uncle Irwin got this, and we never saw him again," said Bozanich. "I didn't want the same thing to happen to me, to be sequestered away like people are ashamed of me. I didn't want to go quietly."
This new visibility marks a "transformative moment" for the Alzheimer's movement, said Braun, who jumped on board for the conference when Bozanich and Smith proposed it a year ago.
Already, the Alzheimer's Assn. is developing "memory clubs" and other groups to help people in the early stages cope.
